Friday, August 17, 2012

Make CF stand for Cure Found


Happy Friday friends! Thanks for coming back yet again, so we can share our story!

Today I'd like to post some miscellaneous info on what you can do to get involved. I have had a number of people ask how they can help, and what an individual can do to make a difference. While we always welcome donations, (which go straight to Cystic Fibrosis Foundation for researching a cure and treatment for all) it also warms our hearts to raise awareness. People ask us questions all the time. Your always taught in school that no question is a dumb question, so I try to keep an open mind.If you are anything like we were before our journey, when it comes to Cystic Fibrosis you know minimal facts, if anything at all. So we know people aren't trying to increase our worry, or challenge our way of doing things, it's simply a lack of knowledge and an increase in curiosity. If you'd like to learn more for your own peace of mind, or would like information to share, please check out the following websites. (These all have up to date, precise info from authentic, medical sources)







I think two of the most common misconceptions are that people with CF can not be too sick because they look like normal people and that this is a childhood illness that they will " grow out of" Neither of these statements are true, but you would probably be alarmed at how many times I have heard both. I know people don't say these things to be malicious, they just don't know any better.

Snack time


Eating is so much work
Always eating


It is a fact that children with CF look normal, from the outside. The only problems they have in the appearance department are that they tend to be on the skinny side. ( What a problem to have right?) Violet is closely weighed/measured and charted each month and given a BMI percentage. Our doctors and nutritionist want her at the 50% or above. She is yet to hit it,but she's getting close! Last time she was up to 39%, and out of the red zone, into the yellow! It is a hard concept to wrap your head around, when you look at her chunky thighs and big belly. I guess comparing her to Ava she seems chunky, but at 10 months she wasn't quite 18lbs. Trying to beef her up, starting with all the foods Ive tried to avoid the last 10 years!

Ill keep it short, but I'd like to share an exert from a poem another mother of CF shared with me. It captured a lot of my emotions and helped me realize there are other people out there feeling the very same things I've felt.
"Some days...everythings ok. I can speak with a smile about other things that fill our lives and how a disease will not stop us from doing things we love. I can pretend I am not holding my breath everytime she coughs, trying not to look concerned. Some days it's not ok.Sometimes telling our story and reading other's makes me ache to the bone and causes tears that overflow and will not stop.Today I think about how healthy my child looks, and how quickly that could all change. I know that what we see or touch in our own lives can not be ingrained in us. That when it is not our child gasping for air or coughing until they vomit we can not understand. It is not our fight, and I will be thankful to those who do brave into our world. I will identify the immense selflessness it takes to walk into such pain and shed light. To take someone's grief and make it your own. To donate and walk and educate when it is not your own child. To willingly glimpse a reality that is not yours."
~ Bree  Alsman

Have an awesome weekend everyone!
 Blessings,
Ellissa





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